Pan-Canadian Health Data Charter
As part of the Working Together to Improve Health Care for Canadians plan, federal, provincial, and territorial (FPT) governments, except Québec, committed to working together to modernize the health system by improving how health information is collected, shared, used, and reported to Canadians to promote greater transparency on results and inform decisions. Governments also committed to adopting common standards and policies so that people living across Canada can more easily access their health information and benefit from it being securely shared across care settings, while protecting their privacy. The Pan-Canadian Health Data Charter Footnote 1 reaffirms a common set of principles intended to guide collective action towards a shared vision for health data in Canada.
The Charter is based on advice from the Expert Advisory Group on Health Data, which recommended establishing common principles "inspired by the universal human rights to health, to benefit from science, and to non-discrimination and equity, and founded on the five principles of public administration, comprehensiveness, universality, portability, and accessibility (Canada Health Act)." This Charter highlights Canada's commitment to respecting Indigenous data sovereignty and Indigenous-led health data governance.
To honour the duty to put people and populations at the core of all decisions about the disclosure, access and use of health information, the Pan-Canadian Health Data Charter requires:
- Person-centric health information design to ensure that health data follows the individual across points of care to support individual, clinical, and analytical access and use while respecting individual privacy with regard to the handling of their information under existing privacy legislation.
- Inclusion of diverse members of the public, patients, communities and other partners in culturally integrated health information system development and oversight.
- Commitment to support First Nations, Inuit and Métis data sovereignty and Indigenous-led governance frameworks.
- Common standards for terminology, health data design, stewardship, interoperability, access, and portability.
- The quality, security and privacy of health data to maximize benefits, build trust, and reduce harm to individuals and populations.
- Timely availability and accessibility of meaningful and comprehensive health data to individuals, decision makers, the health workforce, and researchers to support an individual's health needs, quality health programs and services, population and public health, and research.
- The ethical use of health data to support decision making, policies, programs, services, statistics, and research for better health outcomes, while respecting the importance of open science and being open-by-design.
- Data-driven social and technological innovation through partnership, invention, discovery, value creation and international best practice.
- Literacy regarding health dataFootnote 2, health data analysis and digital methods for the public, decision-makers, the health workforce, and researchers.
- Harmonization of health data governance, oversight, and policy in areas jointly agreed to by FPT governments for pan-Canadian coordination.
- Footnote 1
Although Quebec shares many of the principles set out in this document, it does not subscribe to a Pan-Canadian Health Data Charter, as it intends to retain its full autonomy in its exclusive jurisdiction over the planning, organization and management of its health system. Quebec will pursue its approach to data sharing through specific agreements that are tailored to its needs.
- Footnote 2
"the degree to which an individual has the capacity to obtain, communicate, process and understand basic health information and services to make appropriate health decisions", US Centre for Disease Control, Healthy People 2010 and Healthy People 2020.
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